Ready to leave? - Adolescents' and parents' perceptions of transition from paediatric to adult rheumatology care.

BACKGROUND: In Sweden, approximately 2000 children live with Juvenile Idiopathic Arthritis (JIA). About half of them continue to have an active disease and need to transfer to adult rheumatology care. This study aimed to investigate Swedish adolescents' and parents´ perceptions of readiness for transition from pediatric to adult rheumatology care. METHODS: The study was a cross-sectional quantitative study. Patients at the pediatric rheumatology clinic at a university hospital in Sweden and members of The Swedish National Organization for Young Rheumatics aged 14-18 and their parents were invited to participate in the study. Data was collected with the Readiness for Transition Questionnaire (RTQ) focusing on adolescents' transition readiness, adolescents' healthcare behaviors and responsibility, and parental involvement. Data were analyzed with descriptive statistics. Comparative analyses were made using non-parametric tests with significance levels of 0.05 as well as factor analyses and logistic regression. RESULTS: There were 106 adolescents (85 girls, 20 boys) and 96 parents answering the RTQ. The analysis revealed that many adolescents and parents experienced that the adolescents were ill-prepared to take over responsibility for several healthcare behaviors, such as booking specialty care appointments, calling to renew prescriptions and communicating with medical staff on phone and to transfer to adult care. Parents and adolescents alike stated that it was especially difficult for the adolescents to take responsibility for healthcare behaviors meaning that the adolescents had to have direct interaction with the healthcare professionals (HCPs) at the paediatric rheumatology clinic, for example to renew prescriptions. It was evident that the adolescents who perceived they were ready to take responsibility for the aspects related to direct interaction with HCPs were more overall ready to be transferred to adult care. CONCLUSION: Adolescents need more support to feel prepared to transfer to adult care. With the results from this study, we can develop, customize, and optimize transitional care programs in Sweden for adolescents.

Impact of the pandemic on leisure physical activity and alcohol consumption.

BACKGROUND: The COVID-19 pandemic precipitated heightened morbidity and elevated mortality attributed to the SARS-CoV-2 infection. The pandemic also influenced health behaviors such as physical activity (PA) and alcohol consumption. The aim of this study was to examine changes in leisure PA and alcohol consumption in Sweden during the pandemic, and elucidate potential discrepancies in changes across demographic strata and socioeconomic status (SES). METHODS: Data were retrieved from two waves of the longitudinal cohort study Life conditions, Stress and Health (LSH) (n = 2,523). Two measures of change were used; longitudinal change relative to baseline (2012-2015) and reported change compared to before the pandemic. For these two change measures, differences between sex, age group and SES were analyzed using multinomial logistic regression. RESULTS: Regardless of the change measure, the proportion of individuals with diminished PA was notably higher among females compared to males. Furthermore, relative to baseline, females were less likely to have increased their PA, however according to the reported change they were more likely to have increased PA. Longitudinal change in PA compared to baseline followed a reversed age gradient, while, according to reported change, a decrease in PA during the pandemic was most prevalent in respondents 45 years of age at baseline (OR = 1.8, CI: 1.2-2.5) and respondents 50 years of age at baseline (OR = 1.7, CI: 1.2-2.4). High SES was associated with a greater variability in PA. Alcohol consumption was generally reduced during the pandemic. However, individuals aged 40 or 45 years at baseline were more likely than others to have initiated risky alcohol consumption. CONCLUSIONS: Females exhibited a greater propensity to alter their PA levels during the pandemic, with the most profound decreases observed among individuals of working ages. Despite a general downturn in alcohol consumption, individuals aged 40 and 45 had a heightened likelihood of having initiated risky alcohol consumption compared to individuals in other age cohorts. In conclusion, societal restrictions during a pandemic render a dual impact on PA levels. While posing a risk for decreased PA among individuals in working ages, the restrictions also present a potential window of opportunity to increase PA, particularly among females.

The Social Insurance Literacy Questionnaire (SILQ): Development and Psychometric Evaluation.

PURPOSE: For clients to understand social insurance decisions and processes, information from authorities needs to be comprehensible, and clients need sufficient individual abilities. These dimensions are captured by the concept social insurance literacy, which has been operationalized into a measure, the Social Insurance Literacy Questionnaire (SILQ). The aim of this study was to describe the development of the SILQ and evaluate its psychometric properties using Rasch measurement theory. METHODS: The development of the SILQ included a Delphi study and cognitive interviews. A preliminary version, divided on four scales corresponding to the domains of the concept (obtaining information, understanding information, acting on information, and system comprehensibility) was psychometrically evaluated according to Rasch measurement theory, in a survey to a stratified random sample of people on sick leave (n = 1151) sent out in the fall of 2020. RESULTS: Overall, the items in the final version of the SILQ demonstrated good fit to the Rasch model, and the response scale worked as intended. Unidimensionality was supported for all scales, but minor problems with local dependency was detected for three items. The person separation was 0.80 for the Obtain scale, 0.82 for the Understand scale, 0.68 for the Act scale, and 0.81 for the System scale. Corresponding ordinal alpha values were 0.91, 0.91, 0.86, and 0.91, respectively. CONCLUSION: This study is a first step toward exploring literacy in the social insurance field. The SILQ covers individual abilities and systems' comprehensibility, and the results show that it has acceptable psychometric properties.

Evaluation of patient participation in relation to the implementation of a person-centered nursing shift handover.

BACKGROUND: It has been suggested that nursing shift-to-shift handover should be a more team-based dialogue with and for the patient rather than about a patient. AIM: The aim of this study was to evaluate patient participation in relation to the implementation of the person-centered handover (PCH). METHOD: A pretest-posttest design was used without a comparison group, including patients from nine units in a university hospital at pretest (n = 228) and after implementing PCH (posttest, n = 253) per the framework integrated-Promoting Action on Research Implementation in Health Services. The PCH is inspired by an Australian bedside handover model. The Patient Preferences for the Patient Participation tool was used to rate the preference for and experience of participation on 12 items, combined into three levels of preference-based participation (insufficient-fair-sufficient). RESULTS: There were no differences regarding experience or preference-based participation between patients at pretest-posttest; however, posttest patients experienced participation in the item Reciprocal communication to a lesser extent than the pretest patients. Only 49% of the posttest group received PCH; of those not receiving PCH, some would have wanted PCH (27%), while some would have declined (24%). Patients receiving PCH had sufficient participation (82%), to a greater extent, regarding the item Sharing one's symptoms with staff than patients at pretest (72%). Patients receiving PCH also had sufficient participation, to a greater extent, than patients at posttest who did not receive, but would have wanted PCH, regarding four items: (1) sharing one's symptoms with staff, (2) reciprocal communication, (3) being told what was done, and (4) taking part in planning. LINKING EVIDENCE TO ACTION: Most patients want to be present at PCH. Therefore, nurses should ask for the patients' preferences regarding PCH and act accordingly. Not inviting patients who want PCH could contribute to insufficient patient participation. Further studies are needed to capture what assistance nurses would want in identifying and acting in alignment with patient preferences.

"How Are My Age and Cows Related?" Cognitive Interviewing as a Tool to Pretest Survey Questions in Two Limited Resource Settings.

Antimicrobial resistance is a complex topic requiring interdisciplinary solutions embedded in One Health thinking. Currently, many surveys are underway in low- and middle-income countries to study how antimicrobial use in the livestock sector is driving resistance. In a survey, the respondents must understand and answer the questions correctly to produce accurate and valuable results. Pretesting survey questions is therefore important but sometimes not performed due to limited time and resources. Cognitive interviewing is a pretesting method to give insights into the respondent's way of interpreting and mentally processing the survey questions to identify problems and finding ways to improve the questions. It has previously been suggested that cognitive interviews may be difficult to use in some cultural settings. This study aimed to use cognitive interviews in a respondent-adjusted way to study how survey questions related to antimicrobial use are understood and answered by 12 small-scale farmers in Kenya and Uganda. The results show that even a small number of interviews and using interviewers with limited knowledge of cognitive interviewing can identify many problems in survey questions and the survey tool. Cognitive interviews may provide a feasible and affordable way of pretesting questionnaires in situations where time and resources are limited, for example, during a disease outbreak.

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

BACKGROUND: Patient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients' experiences of participation in conjunction with their preferences, particularly in long-term healthcare. The aim of this study was to investigate the extent and variation of preference-based patient participation in patients with end-stage kidney disease (ESKD). METHODS: A cross-sectional study was conducted with 346 patients in renal care. The main variables were patients' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference-based patient participation measure. RESULTS: Overall, 57%-84% of the patients reached a sufficient level of preference-based patient participation on the items, while 2%-12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment. CONCLUSION: This study shows that, although many patients reach a sufficient level of preference-based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients' preferences are needed for healthcare professionals to support person-centred patient participation. PATIENT OR PUBLIC CONTRIBUTION: The 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.

Development and validation of REAGERA-P, a new questionnaire to evaluate health care provider preparedness to identify and manage elder abuse.

BACKGROUND: Elder abuse is prevalent and associated with morbidity but often goes unnoticed in health care. Research on the health care response to victims calls for valid measurements. This article describes the development and validation of a questionnaire to evaluate health care provider preparedness to care for older adults subjected to abuse, the REAGERA-P (Responding to Elder Abuse in GERiAtric Care - Provider questionnaire). METHOD: REAGERA-P was developed in phase I. The questionnaire includes a case vignette, self-efficacy scales for identifying and managing elder abuse cases and cause for concern as well as organizational barriers when talking with older patients about abuse. Content validity was ensured by a review committee, and cognitive interviews were conducted to ensure face validity and to examine cognitive processes to ensure comprehension. REAGERA-P was then administered to health care providers (n = 154, response rate 99 %) to test for construct validity. Factor analysis was performed, and internal consistency was tested for the self-efficacy scales. Convergent validity was tested by investigating associations between relevant variables. Some items were revised in phase II, and new cognitive interviews were performed. Parts of the questionnaire were tested for responsiveness by administering it to medical interns (n = 31, response rate 80 %) before and after an educational intervention. RESULTS: REAGERA-P showed good content and face validity. The factor analysis revealed two factors: one for asking questions about abuse (Cronbach's α = 0.75) and one for managing the response to the questions (Cronbach's α = 0.87). Results suggest good convergent validity for the self-efficacy scales and for questions about cause for concern and organizational barriers. The responsiveness of the self-efficacy scales was good: the mean on the scale for asking questions (range 0-30) was 15.0 before the intervention and 21.5 afterwards, the mean on the scale for managing the response (range 0-50) was 22.4 before the intervention and 32.5 afterwards. CONCLUSION: REAGERA-P is a new questionnaire that can be used to evaluate health care provider preparedness to identify and manage cases of elder abuse, including educational interventions conducted among staff to improve health care responses to victims of elder abuse. This initial testing of the questionnaire indicates that the REAGERA-P has good validity.

Assessing and reporting patient participation by means of patient preferences and experiences.

BACKGROUND: Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients' preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation. METHODS: With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested. RESULTS: Data from the 4Ps demonstrated the individuals' preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient's preferences, or the patient's preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures. CONCLUSIONS: Ways to easily acquaint stakeholders with patients' preferences for patient participation are needed, in order for healthcare staff to better use resources to match the basic requirements of individuals and groups. While the 4Ps can guide professionals to patient participation as framed in legislations, concept analyses and by patients, a visualisation of the results is needed to capture preference-based patient participation. The proposed route to representing degree of match in preferences and experiences may also be relevant to other dimensions of quality of healthcare.

Measuring psychosocial factors in health surveys using fewer items.

The present study investigated the possibility of reducing length of psychosocial scales, while maintaining validity, using easily manageable techniques. Data were collected 2003-2004 in a Swedish general population; n = 1007, ages 45-69, 50% women. Eight psychosocial scales were reduced from 6-20 to 3-7 items maintaining Cronbach's alpha >0.7 and correlation coefficients between full and reduced scales > 0.85. Relationships to biomarkers for inflammation, self-rated health and 8-year incidence of coronary heart disease showed no difference between full and reduced scales. It was possible, using these easily manageable methods, to reduce scale length without threatening validity for use in population surveys.

Development of a self-care questionnaire for clinical assessment of self-care in patients with inflammatory bowel disease: A psychometric evaluation.

BACKGROUND: Patients with inflammatory bowel disease have lifelong needs to learn how to manage their symptoms and life situation. The range of actions that patients take in order to manage daily life and maintain health is referred to as self-care. Assessment of self-care in patients with inflammatory bowel disease could allow targeted support and education by health care professionals. There are no existing measures assessing self-care in patients with inflammatory bowel disease. OBJECTIVES: The aim was to develop and evaluate the self-care questionnaire for assessment of self-care among patients with inflammatory bowel disease. METHODS: Qualitative and quantitative methods were used to develop the inflammatory bowel disease self-care questionnaire. The development and evaluation process was performed in three phases: (1) item generation based on interviews with patients with inflammatory bowel disease (n = 20), (2) content validation in a panel of experts (n = 6) and patients (n = 100) assessed with the content validity index, cognitive interviews and quantifying and ranking the items to determine the usability of the questionnaire, and (3) final evaluation through a pilot study (n = 93) with test-retest evaluation (n = 50). An expert review group of three nurses and one physician continuously discussed the result during the development process. RESULTS: A total of 91 patients with Crohn's disease and 102 with ulcerative colitis participated. The final self-care questionnaire consists of 22 items. Assessment of content validity indicated that the items were adequate and easy to understand. Test-retest reliability was confirmed with intraclass correlations above 0.6 after a three week interval, for all items except one. CONCLUSION: An inflammatory bowel disease-specific self-care questionnaire was developed using structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess the ability of patients with inflammatory bowel disease to perform routine self-care.

Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) - retaining or modifying validated instruments.

BACKGROUND: The Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness. METHODS: In HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from 'almost never true' to 'almost always true'; while the Swedish HECS labels range from 'never' to 'always'. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group. RESULTS: The Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected 'never' and 'always'. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word 'respect' was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients' wishes implied always complying with them. CONCLUSIONS: The process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.

Development and evaluation of the Communication over Language Barriers questionnaire (CoLB-q) in paediatric healthcare.

OBJECTIVE: To develop a valid and reliable questionnaire addressing the experiences of healthcare personnel of communicating over language barriers and using interpreters in paediatric healthcare. METHODS: A multiple- methods approach to develop and evaluate the questionnaire, including focus groups, cognitive interviews, a pilot test and test-retest. The methods were chosen in accordance with questionnaire development methodology to ensure validity and reliability. RESULTS: The development procedure showed that the issues identified were highly relevant to paediatric healthcare personnel and resulted in a valid and reliable Communication over Language Barriers questionnaire (CoLB-q) with 27 questions. CONCLUSION: The CoLB-q is perceived as relevant, important and easy to respond to by respondents and has satisfactory validity and reliability. PRACTICE IMPLICATIONS: The CoLB-q can be used to map how healthcare personnel overcome language barriers through communication tools and to identify problems encountered in paediatric healthcare. Furthermore, the transparently described process could be used as a guide for developing similar questionnaires.

To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R).

BACKGROUND: Paediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction. METHODS: The procedure included linguistic translation and cultural adaptation of MDS-R's paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care. RESULTS: To achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens. CONCLUSIONS: Translation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.

The Swedish RAND-36 Health Survey - reliability and responsiveness assessed in patient populations using Svensson's method for paired ordinal data.

BACKGROUND: The Short Form 36-Item Survey is one of the most commonly used instruments for assessing health-related quality of life. Two identical versions of the original instrument are currently available: the public domain, license free RAND-36 and the commercial SF-36.RAND-36 is not available in Swedish. The purpose of this study was threefold: to translate and culturally adapt the RAND-36 into Swedish; to evaluate its reliability and responsiveness using Svensson's method for paired ordered categorical data; and to assess the usability of an electronic version of the questionnaire.The translation process included forward and backward translations and reconciliation. Test-retest reliability was examined during a period of two-weeks in 84 patients undergoing dialysis for chronic kidney disease. Responsiveness was examined in 97 patients before and 2 months after a cardiac rehabilitation program. Usability tests and cognitive debriefing of the electronic questionnaire were carried out with 18 patients. RESULTS: The Swedish translation of the RAND-36 was conceptually equivalent to the English version. Test-retest reliability was supported by non-significant relative position (RP) values among dialysis patients for all RAND-36 subscales (range - 0.02 to 0.10; all confidence intervals (CI) included zero). Responsiveness was demonstrated by significant improvements in RP values among cardiac rehabilitation patients for all subscales (range 0.22-0.36; lower limits of all CI > 0.1) except two subscales (General health, RP -0.02; CI -0.13 to 0.10; and Role functioning/emotional, RP 0.03; CI -0.09 to 0.16). In cardiac rehabilitation patients, sizable individual variation (RV > 0.2) was also shown for the Pain, Energy/fatigue and Social functioning subscales.The electronic version of RAND-36 was found easy and intuitive to use. CONCLUSIONS: Our results provide evidence supporting the reliability and responsiveness of the newly translated Swedish RAND-36 and the user-friendliness of the electronic version. Svensson's method for paired ordinal data was able to characterize not only the direction and size of differences among the patients' responses at different time points but also variations in response patterns within groups. The method is therefore, besides being suitable for ordinal data, also an important and novel tool for gaining insights into patients' response patterns to treatment or interventions, thus informing individualized care.

Development and evaluation of the EOL-ICDQ as a measure of experiences, attitudes and knowledge in end-of-life in patients living with an implantable cardioverter defibrillator.

BACKGROUND: Due to extended indications and resynchronization therapy, many implantable cardioverter defibrillator (ICD) recipients will experience progressive co-morbid conditions and will be more likely to die of causes other than cardiac death. It is therefore important to elucidate the ICD patients' preferences when nearing end-of-life. Instead of avoiding the subject of end-of-life, a validated questionnaire may be helpful to explore patients' experiences and attitudes about end-of-life concerns and to assess knowledge of the function of the ICD in end-of-life. Validated instruments assessing patients' perspective concerning end-of-life issues are scarce. AIM: The purpose of this study was to develop and evaluate respondent satisfaction and measurement properties of the 'Experiences, Attitudes and Knowledge of End-of-Life Issues in Implantable Cardioverter Defibrillator Patients' Questionnaire' (EOL-ICDQ). METHODS: The instrument was tested for validity, respondent satisfaction, and for homogeneity and stability in the Swedish language. An English version of the EOL-ICDQ was validated, but has not yet been pilot tested. RESULTS: The final instrument contained three domains, which were clustered into 39 items measuring: experiences (10 items), attitudes (18 items), and knowledge (11 items) of end-of-life concerns in ICD patients. In addition, the questionnaire also contained items on socio-demographic background (six items) and ICD-specific background (eight items). The validity and reliability properties were considered sufficient. CONCLUSIONS: The EOL-ICDQ has the potential to be used in clinical practice and future research. Further studies are needed using this instrument in an Anglo-Saxon context with a sample of English-speaking ICD recipients.

Can incentives undermine intrinsic motivation to participate in epidemiologic surveys?

Response rates to surveys are decreasing. The purpose of this study was to evaluate the use of lottery tickets as incentives in an epidemiologic control group. A self-administered questionnaire was sent to parents in the municipality of Stockholm, Sweden, who were to be used as a control group in a study addressing stress in parents of children with cancer. A stratified random sample of 450 parents were randomized into three incentive groups: (a) no incentive; (b) a promised incentive of one lottery ticket to be received upon reply; (c) a promised incentive of one lottery ticket to be received upon reply and an additional lottery ticket upon reply within 1 week. The overall response rate across the three groups was 65.3%. The response rate was highest in the no incentive group (69.3%) and lowest in the one plus one lottery ticket group (62.0%). In a survival analysis, the difference between the two response curves was significant by the log-rank test (P = 0.04), with the no incentive group having a shorter time to response than the incentive group. Our findings suggest that the use of lottery tickets as incentives to increase participation in a mail questionnaire among parents may be less valuable or even harmful. Incentives may undermine motivation in studies in which the intrinsic motivation of the respondents is already high.

Respondent satisfaction regarding SF-36 and EQ-5D, and patients' perspectives concerning health outcome assessment within routine health care.

OBJECTIVE: To investigate respondent satisfaction regarding SF-36 and EQ-5D and patients' perspectives concerning health outcome assessment within routine health care. METHODS: Eighteen Swedish hospitals participated in the study which included 30 patient intervention groups (e.g. education groups for patients with ischemic heart disease or chronic obstructive pulmonary disease). Patients responded to SF-36 and EQ-5D before and after ordinary interventions (n = 463), and then completed an evaluation form. RESULTS: Regarding respondent satisfaction, most patients found both questionnaires easy to understand (70% vs. 75% for SF-36 and EQ-5D respectively), easy to respond to (54% vs. 60%), and that they gave the ability of describing their health in a comprehensive way (68% for both). Health outcome assessment in routine health care was perceived as valuable by 57% of the patients, while 4% disapproved. Most patients (68%) considered both questionnaires equally suitable; 25% preferred SF-36 and 8% EQ-5D. Among those who were more satisfied with a short questionnaire (EQ-5D), several still preferred a longer and more comprehensive questionnaire (SF-36). CONCLUSION: Health outcome assessment within routine health care seems to be acceptable, and even appreciated, by patients. Questionnaire length and ease of response were not found to be crucial arguments in choosing between SF-36 and EQ-5D.